What silence says

Insights from recent academic and policy research

Dear Debriefers,

Today's edition looks at insights from recent academic and policy research.

We go into disability history to see how silence has shaped the narratives of disabled Asian Americans. There are miracles in medieval Norway, and from China the formation of the deaf community from the nineteenth century.

And looking to the future we see an increasing use of algorithms, the situation of youth with disabilities, and experiences of students in India.

Reader support makes the Debrief possible. Thanks to David for a new contribution.

What silence says

A paper by academic Naoko Wake looks at twentieth century history and archives of Asian American Disability. Wake finds it to be a history characterised by silences: in the official records, and in family stories.

Asian Americans are stereotyped as the “model minority”, an immigrant community “that has been long mischaracterized as excessively able.” Official records present experiences of loss as expected challenges that are then overcome “presumably thanks to the abundant opportunities for self-improvement in the United States.” But as we've seen before, disabled people don't fit neatly into the expectations that hard work liberates.

Wake finds a counterpart to the way official records simplify people's lives in literature and oral histories. As Lucy Delap wrote about in British history, disabled people's own stories are essential to reveal what is left out of institutional records.

In the case of Wake's sources, sometimes these stories don't speak about disability directly but rather through an “articulate silence”. Looking for disability can mean looking for what's unsaid. The silence around experiences of disability is a productive and disturbing tension that implicates and challenges ableism, social barriers and the causes of disability itself.

Some of these silences are produced by conditions of disability: failing eyesight, speech, or hearing, or the symptoms of Parkinson's. Other silences come from the pressures of ableist society and national identities, the gaps between generations, or the pressure of being a model minority. And more silence is created in the inheritance of American violence overseas.

Particularly striking is Wake's encounter with a family where the mother is a survivor of the US atomic bombing of Hiroshima in 1945. Aftereffects of radiation continued through Tomiko's life and into her marriage. She does not describe these symptoms herself, but they are explained by her “eloquent” daughter Minori. Through a long conversation, the impacts the bomb had on them and their family are slowly revealed:

“Although Minori is concerned about [the] physical ailments that might have been caused by Tomiko's radiation exposure, something less obviously physical yet equally tangible—her parents’ troubled relationship—effected nuclear survivorhood more powerfully. War continues to rage through generations, although one rarely sees or hears it.”

Wake's article has a striking echo in the writing of Alice Wong, a disabled Asian American activist who wrote about being “newly nonspeaking” after a tracheostomy. Her reflections on silence also make a powerful claim to its power:

“The worlds of speech and silence intersect and overlap. Silence isn’t static or limiting. Silence is not an empty void. Silence has a landscape of its own. Silence has its own dimension, a space that enables another way of thinking and being. There is dignity in all forms of communicating.”

Hope of a cure

If you lived in Norway eight hundred years ago, and had a health problem, physical disability or mental health condition, then all was not lost. Like in other areas of medieval Europe, one type of healthcare you could get was “holy healing”. And one way you might get it by going to a shrine and leaving a small replica of the affected body part.

These practices are analysed in a recent paper from Hólmfríður Sveinsdóttir, on the material culture of medieval disability. Sveinsdóttir looks at a Norwegian collection of these offerings – “votives” – and sees what they tell us about experiences of living with disability.

The Norwegian votives were made in wax, wood or silver and the ones that have survived to today usually come from being left in churches or shrines. They include models of arms, legs, hands as well as mobility devices like hand-trestles and knee braces:

“While models of body parts could be given in the hope of a cure, the leaving of mobility aids was seemingly always given as thanks for miraculous healing already acquired. [...] The presence of mobility aids was likely to be an especially striking vision for a visiting pilgrim – attesting to the life-changing healing performed by a miraculous crucifix or statue.”

Trying to discover the lives of disabled people through these material remains is also trying to patch together many silences and unknowns. Sveinsdóttir uses the votives to show how disabled bodies were negotiated in healthcare, faith and these holy places. She uses “trans-corporeality” to argue that these votives should not merely be seen as a representation but acting “as a material extension of the body”.

Sveinsdóttir cites a striking example cites a striking example of how there were different boundaries between bodies, objects, and peoples is from medieval England. Objects were placed in graves to “heal a corpse of its illness or impairment before judgement day”.

It's worth noting that these were not static ideas. There are some theologians as early as the eighth century condemning the use of wooden hands and feet as pagan superstition. And later they became targets of the Reformation, which banned these offerings.

These are enduring patterns. As Alexander Ogheneruemu recently wrote from Nigeria, it is still assumed that disabled people go to church to be cured. In France, Lourdes claims thousands of reports of healing and has the permanent presence of a doctor to verify them. And in many places the image of a disabled person after death imagines them without their disability or mobility device.

For another dimension of disability and material histories, see a previous discussion on Ancient Egypt.

An inclusive deaf community

Another historical view comes from Shu Wan's article on the formation of the deaf community in China between 1887 and 1945.

In many ways international exchange on disability feels a cutting edge and modern phenomenon. But it's not in fact new. This article illustrates how deaf schools in China were shaped by international exchange since the 1887 foundation of a deaf school by an American missionary. Later, in 1912, Nobuhachi Konishi, the president of a blind-and-deaf school in Tokyo published an article in Chinese to encourage further cooperation:

“Besides telling the founding story of deaf education characterized by the collaboration between Japanese people and Western missionaries, Konishi ended his writing with the suggestion of developing a Chinese-owned enterprise of deaf education. ‘(You may) consider sending Chinese blind and mute students to study in Japan or hiring graduates of deaf and mute schools in Japan, who are versatile and skilled as teachers to work in China’.”

By 1939 a journalist's survey would document thirteen deaf schools in China, three of which were located in Shanghai. Government officials followed and praised their progress but support came mainly from civil society and entrepreneurs.

Wan shows how education led in turn to the formation of a deaf community. A National Association for the Deaf People was formed in 1937, just one month before war broke out with Japan. The Association's goals will be familiar to any disability organisation today:

‘[The Association's] inaugural chair announced the plan of action, including “building a wartime deaf school for refugee children,” “seeking a solution to deaf people’s unemployment,” “arranging an art exhibition of deaf artists’ works,” and “undertaking a national survey of deaf people’s general condition”.’

One striking feature of the Association (that many contemporary organizations would do well to pay attention to) is their efforts to include deaf people excluded from existing networks and opportunities:

“The Association played an essential role in blurring class lines inside the deaf community. During the national crisis, well-educated deaf people made efforts to provide “poor relief” to their impoverished counterparts, transforming the well-educated deaf-centric network into an inclusive deaf community.”

“Your algorithm doesn't know me”

Looking now to the future, United against algorithms is a useful “primer on disability-led struggles against algorithmic injustice” by Georgia van Toorn. It shows the progressive use governments are making of automated decision-making processes and the ways disabled people are resisting them.

As well as unjust denials of benefits, decrease in transparency of decision-making, there is also an expanding surveillance. These algorithms then interact with the suspicions society has of disabled people supposedly “faking it”. As workshop participant Kevin de Liban said:

“There’s just this inherent scepticism around disability and that invites datafication of disabled people’s lives. It also includes a lot of perverse logic to undermine resistance. So we’re going to surveil your life, we’re going to make you prove to us that you’re really disabled and we’re going to do it through sort of automated means or increasingly automated means and if you don’t like it, well what do you have to hide? Are you still really disabled?”

Shift from an adult-centric approach

A coalition led by the UN Youth Office have a new report, Believe in better, on young persons with disabilities aged between 15 and 24 years old. It summarises data and barriers young people face, drawing on sources from almost fifty countries, mostly low- and middle-income. It summarises the data:

“Young persons with disabilities are lagging behind their peers in the areas of education, employment, and ICT access. These disproportionalities can have rippling effects in other aspects of their lives, including in their participation in other sectors of society and the exercise of their freedoms. They can have long-lasting impacts that place young persons with disabilities in lower life trajectories than those without disabilities as they grow older.”

The research identifies the interaction between disability and age as preventing young people finding their place in society:

“The stigma and stereotypes associated with both disability and youth are significant barriers. The prevailing medical and charity approaches to disability view persons with disabilities as mere recipients of protection or assistance. Young persons are often seen as inexperienced or immature, leading to the devaluation or dismissal of their inputs. Moreover, the prevalent culture of overprotection towards young persons with disabilities, particularly young women with disabilities, significantly hampers their involvement in decision-making processes.”

And it finds a generational gap inside the disability movement, which often means young activists prefer independence to joining established organisations:

“Young respondents expressed scepticism towards the senior members of [Organisations of Persons with Disabilities], fearing a lack of support or understanding for their initiatives. This generational gap sometimes results in disagreements between youth and older members, indicating a need for a paradigm shift from an adult-centric approach to one that is intergenerational and more youth-oriented.”

Alternative and informal support

Some examples of experiences facing young people with disabilities comes from a look at students with disabilities in higher education in India. This NCPEDP report is based on interviews with 250 students from four states. It includes cases of classic access barriers as well as emerging accessibility and inclusion opportunities.

A law student with polio talks about how he had to take his entry examination:

“The situation became bad when I reached the center. It was very difficult for me to get inside the examination hall. The ramp was broken, and the stairs were also in deplorable condition. There was no wheelchair in the center. I could not walk as I had polio in my legs and my legs were badly deformed. I was perplexed a bit but I had to take my entrance examination. I waited for a few moments, then I got down from my scooty. I lay down on the ground and I started walking on my hands. I somehow climbed on stairs leading to the corridor of the ground floor where my examination hall was situated. It took me around 45 minutes to reach the hall. I have been dealing with this issue ever since I started studying. This has become a norm for me now.”

20% of students reported sexual harassment while commuting to their higher education institutions, and this was irrespective of gender. One student with visual impairment in Mumbai describes the toll of the inappropriate touching on the commute, and why she's not able to take action:

“This become unbearable for me and I encounter this almost every day. I cannot launch a complaint as I don’t know the perpetrator. I cannot react as people will gaze at me and blame me for the situation. I am from a conservative family. I don’t have the guts to share my problem with anyone, not even with my family as I fear I will be stopped from going to college.”

One area in which there is a striking gender difference is that 10% of the girls with disabilities migrated for their higher studies as compared to 72% of the boys with disabilities.

The report contains cheering and surprisingly positive descriptions of “disabled-friendly and all-inclusive” hostels, as well as caveats of limitations in how far this accessibility goes, and the challenges of access in getting to and from the universities.

The mixed level of support and challenges in environment mean that students learn to find their own ways through. That includes developing skills for independent living, managing stress, and the networks that make it possible:

“Students have also shared during interview about the importance of interpersonal skills to sustain in higher educational spaces. In the absence of effective formal institutional support, interpersonal relationship with peers and friends act as an alternative and informal support system for students with disabilities in higher education system.”

And that's all for today. Until next time,


Correction: an earlier version of this article attributed the report on youth to the United Nations Population Fund (UNFPA). UNFPA was just one of the organisations producing the report.

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